What are most common side effects when starting HU (Hydroxyurea)?

I was on HU for 24 years. Only side affect was fatigue and yes- thinning hair.
Then I developed a bad case of locally advanced skin cancer on my head. As you know, on HU, you are sensitive to the sun and should be diligent with sunscreen all year round. But who put sunscreen on their head? I didn’t.
I was able to control it with a topical cream that took 6 months to eradicate it but I scared me off of HU. Please all- use sunscreen.

I am now on Anagrelide. I had no previous heart issues so it works for me.
Yes, it initially gave me some heart palpitations but my body adjusted.
I also take nicotinimide which works to thicken my hair and has been shown to be helpful in keeping skin cancer at bay. I am 66.
Was diagnosed with ET at 39.

Great response!! So much of the time what people see as a new symptom has nothing to do with their medications or even their illness - just the fact that they are aging! 🙂 Glad you are doing OK, and put things into perspective. There are much worse things than hair thinking or fingernail ridges, etc.

@janemc
Thank you so much for your caring response. It felt so good to read your last statement, 'I'm so sorry for your diagnosis" I'm going to remember that and remember to tell other newly diagnosed folks that. You see, I have not really heard that from people close to me. In fact, they have told me straight up to my face, things like, you don't have a diagnosis, or disease, you (just) have a condition. It's sort of like, what's the big deal, stop talking about it, or stop worrying about it, etc. I understand some people just don't have the emotional skills or empathy, but sometimes you just hope to hear it from those closest to you. So, thank you!
Now about the dyes, I mentioned it in another post just now. But perhaps others are like me, sometimes i cannot find the other posts again.
I spoke with a compounding pharmacist connection, and she told me that she cannot compound it for me and leave all the unnecessary toxins out because HU is so toxic and would need to create a special setup. she told me that there is a white tablet available, and that the dyes are the just in the capsules not in the white tablet. Dont know yet whether the doc needs to write the script a certain way, or what, and also I don't know yet what that means for the titanium dioxide, grrr, but will post again once I know more.
My platelets are still just hovering around 500. Had a headache yesterday, but remembered to really up my water intake, and take B vitamins and that seemed to help.
Hope this helps you a bit.
Hugs---

gigi05, thank you for your sweet note!

It seems to me that most people really don't care what others are going through. And even if they have some empathy, a weird blood cancer is way beyond their comprehension. So at the moment you most need support, you feel totally alone.

But here, we do understand, and we do care. You're among friends here.

Dear janemc, Well, you could be right. After I was diagnosed with PV I told two “friends” and was shocked by the lack of reaction. Neither asked me what the prognoses was or even how I felt. And, in subsequent conversations that did not change.
Maybe you’re right about “comprehension” but they’re pretty smart and know how to use Google.
I knew these two to be caring people who I thought I could depend on for some support while I myself came to know more about the condition. I was wrong.
I guess it’s just not as “sexy” as other diagnoses! And, I am glad for that.
I’m not a joiner and it took me a long time before I started participating in this forum and I’ve felt better since I did. Both for being able, I hope to provide some help to others, and for being able to “speak” with others who appreciate what Im going through.

As if a mysterious and scary diagnosis weren't bad enough . . . I'm really sorry your "friends" weren't kinder. Sadly, yours was not an isolated incident.

My sister, whom I've supported through two kinds of acute cancer, informed me that she'd researched ET, and it wasn't anything to worry about. All I had to do was eat more cinnamon! (Huh?)

This forum really saves my sanity.

I am also inerested in what medication you are currently taking.
I was on Anagrelide for over 15 years. No side affects at all. Apparently taking Anagrelide for long period can cause Myelofibrosis. Currently waiting results of Bone Marrow test and my GP told me to take Hydroxyurea till I seed specialist as my platelet count was dangerously high. No one told me it was a chemotherapy treatment. I found out that by dr google.

As if a mysterious and scary diagnosis weren't bad enough . . . I'm really sorry your "friends" weren't kinder. Sadly, yours was not an isolated incident.

My sister, whom I've supported through two kinds of acute cancer, informed me that she'd researched ET, and it wasn't anything to worry about. All I had to do was eat more cinnamon! (Huh?)

This forum really saves my sanity.

Thanks to everyone on this forum , I was diagnosed with two mutations middle last year, jak2 and Calr, apparently to have both is complicating treatment. Was on Hydrea for month no change then JAKAVI for 6 weeks no change back on increased Hydrea and injection Aranesp increased dosage with both. No hair loss but the tiredness and weakness when doing anything is tough and tho I never suffered with depression I am having to fight that also. Agree with the conception from friends that they think it's not serious as doesn't conform with other cancers. It is great to hear other views and the positive vibes...

These stories about others reaction to an ET diagnosis is spot on. I have had it for 23 years and neither of my sisters ever ask me about it. If I bring it up they change the subject. A couple of times a sent them articles to read about it. Neither responded and when I inquired they said the articles were too long so they did not read. There is lots of evidence that they do love me but their response to this diagnosis and ongoing challenges is truly a head scratcher.